"He felt joy 150%"

Faith. Our friend. Henry's school nurse. A wise and gentle woman who understood Henry - and loved him.

She spoke at Henry's Memorial Service. So did Casey and Jess. Henry's grandma Jan wrote something and had it read. Zane lit a candle, Anastasia played a song on the piano, mom read "Oh, the Places You'll Go." and dad gave a Eulogy that was honest, vulgar, tender and full of love - for Henry and his father. He has now eulogized his own father and son.

Rebecca, our lovely and supportive and observant officiant - delivered the service to us with grace and gentleness. She knew Henry, she loved Henry. The podium, in front of sad, grieving and expectant loved ones - could not have been an easy place to be. Her husband and family managed the kitchen and food for us. We could not have done without them.

Brendan - our hospice volunteer and now friend - managed the technical stuff for us. We'll have the evidence of that later in the week!

"It was really nice to see all of those people show up for Henry." Zane said upon reflection this morning.
A lot of people came. People who knew us, knew Henry, but we hadn't met yet. People who knew us, but hadn't met Henry - yet were touched by our love for him. People we hadn't seen in decades. People we had never met, but now are securely wrapped in the love that we shared for Henry.

Relationships were healed. Love and honesty shone along with the sun as it spilled through the colored glass of the sanctuary.

Many of us whispered a "Thank you Henry." as we walked away from the evening. Filled with love, hope and promise.

We miss Henry. Profoundly. Henry changed us. Henry made us vulnerable to other people's grief. Henry motivated us to change the world. Henry motivated us to be the best people that we could be.

Because he was. He was the best person he could be. Honestly. Painfully. Joyfully. "150%"

Thank you Henry.

"In a couple of years they have built a home...

...sweet home."


Henry was born on a sunny Saturday in February. At 3:30 pm they pulled him out of me in a whirl of emergency and anxiety.
Henry took his last breath in the dark hours of a warm Sunday morning in August. At 3:30 am we held his body and felt his last heart beat in a still and weary silence.

Next week we celebrate the life that Henry lived. We are asking that folks forgo flowers and make a donation to Henry's Heroes. We have plans for Henry's memory. But we also need to make ends meet. This last month and the next couple of months have been and will be financially difficult. We are lucky that my place of employment is so supportive with the time I've taken off of work, but they can't pay me what I didn't earn... I'm getting back on track, but it's slow, painful and unpredictable.

Our plan has always been to use Henry's Heroes as a way to give back to the community and the world. Our desire to pay it forward is only amplified by Henry's passing.

Henry loved music. We have a planned event for September - to support a local educational youth orchestra. We'll be raising money for a scholarship for one student. This is Zane's project - the rest of us are supporting him.
In February - for Valentine's Day and Henry's Birthday we will be having a Spaghetti Feed with music appreciation - for $$ to support families with special needs children. In late April or early May we will have a Dogwood Celebration (Purpose to be determined) and in August of 2014 we will have some charitable event yet unplanned and we'll do Anastasia's annual food drive as well.

Please contact Noah or Rebecca with details on where and how to donate.

Celebration of Life

In Celebration of Life

Henry Cole Kaplowitz

Day of Birth:

February 14, 2009

Departed This Life:

August 4, 2013

Memorial Service

August 16, 2013   

6pm

First Congregational Church

1050 E 23rd Ave, Eugene, Oregon 97405-3070

Henry Is Survived By:

Father: Noah S. Kaplowitz

Mother: Rebecca Fitkin Kaplowitz

Sister: Anastasia Fitkin

Brother: Zane Fitkin

Brother: Lewis Kaplowitz

Grandparents & Great GrandParents:

Ruth Vanderhoof     Janice Neel     Randy Neel

David Osborn     Pamela McDermott

Preceded in Death by GrandFather: Herbert Kaplowitz

Aunts, Uncles and Cousins:

Gabriel Scott, Jessica Park, Sabrina Scott, Michael and Drew Dutton, Tyas Scott, Kearstyn Scott, Trystan Scott, Deb and Fred Harris, Karrie McCord, Jericho, Ayla and Kitrina Wood-McCord and Nevin Gilkes

 

Henry loved his classmates and teachers at Circle of Friends. He also had many friends all over the world - New Zealand, England, Scotland, Canada, Australia – all over the US and many other places. They each held hearts that loved Henry and his family. Henry will not be forgotten. His love of music will be introduced to children and families as his charity HENRY’S HEROES will begin providing scholarships and planned events to celebrate and honor him.

Oh when the saints go marching in...

Oh when the saints go marching in...

I'm tired of being depressed. I feel like my life is in a disturbing and terrible limbo. Looking forward to the future is confusing and painful and makes me feel guilty. There are so many complexities to our life right now, and we are in control of very few of them. When I am not agonizing about Henry and his pain and discomfort, I am fretting for the rest of our family.
Worrying about the long term effect of watching a brother linger with illness and eventually pass away.
The gravity of my life, my role and my pain eventually overwhelms me.
I watch myself, I understand the 'scholarly' and 'clinical' descriptions of depression and grief. I am right where I am supposed to be, but be damned - I am tired of it.
Things that could make me happy are confusing, conflicting and chaotic.
How can I justify feeling happy when my son is dying?
How do I put on a 'regular' face and purchase paper towels at Target?
How do I plan for the future of my some of my children while planning a eulogy for another?

I want to crawl in hole.

One Day at a Time...

A  weekday - day in the life of Henry and our family.
Mom gets up at 3:30. Makes coffee and lets the dog go out. Wakes Dad and goes to work at 4:30 am. (She's a baker for the Meals on Wheels and Senior Meals Program.)

Dad cleans and gets the house ready for the masses to wake up.
By 8am Dad takes Henry's temp, and checks his diaper. Dad checks the notebook to see what meds Henry had over night. Regular medications start at 8am with a bolus feed of water or formula.
Between 8 and 9, Lewis eats and gets a diaper change, the dog goes out again. Dad begins making phone calls to various establishments and then coordination on CNA's, volunteers and nurses begin. Brendan usually comes on the weekends, to sit an listen to music with Henry.
At 9am Mom calls to check in and coordinate the older kiddos schedules with the rest of the house. Zane has camp and essential running around with 'the guys' and Anastasia has important teenage duties to attend to. Chores are supposed to be done on Mondays, but are usually successfully put off until Tuesday - or recently - never.
Dad does more feeding and diapers. Henry does a bolus feed every 2 hours. Meds are administered every 1 - 2 hours depending on pain level.
Dad does laundry, dishes, sweeping and mopping.
Lewis eats every 45 minutes when he's not climbing up the furniture and trying destroy everything. (He ate some of Mom's carving supplies today.).
Mom usually gets home between 11am and 1pm. Catches up with the events and showers. Then the errands begin. Bank, supermarket, post office. She packages items that have been purchased from her shop and spends some time creating new items to list in her Etsy shop. Mom is currently catching up with her two classes that she's neglected. Her instructors and the administrators have given her 60 days to complete her missing work - so that she can start fresh in the Fall.
Rhonda a CNA comes on Mondays and Wednesdays.
Trevecca and Rebecca usually visit once, sometimes twice a week.
A CNA (Usually Rhonda) comes over. Helps bath Henry and change his bedding. Jess comes on Tuesdays and gives Henry a mani-pedi. He laughs when she does his toes.
Pharmacy delivers sometimes at 2, sometimes at 4pm, sometimes at 2 and 4 pm. Today we say Michelle, a CNA at 2ish - with meds and smoothies for everyone!
Diaper and bolus for Henry at 2pm.
"I pooped," Might as well change Lewis too.
If it's a day that Henry needs a suppository to assist a BM, we try to give it after lunch.
By 3pm everyone is tired. "I wanna pway outside!!" Lew loves the sun and has finally learned to pedal his tricycle. Round and round and round in circles... today he rode through the sprinkler that mom put on the driveway for him. Lew refuses to nap so he's usually obnoxious and very antagonistic by late afternoon.  Sometimes, he runs around in circles to keep himself awake.
Every 2 hours (Sometimes more often - like today) Dad sends Henry's nurse all of his vital information. Temp, heart rate and respirations.
Dinner? What's for dinner? A couple of times a week someone might bring us a meal or have Pony Express deliver something. Our out-of-town friends have had a larger showing when it comes to meals, than our local community.
Sometimes we have ice-cream cones.
One last ride around the carport.
Check Henry's vitals. Give night time meds. Change diaper. Check in with Casey.
Bath time!
Bed time - diapers, medicine, conversation with nurse.

By 9pm everyone is tucked in. Mom sleeps 'on point' with Henry in the living room during the week.
Meds are given on nights when Henry has pain. Every hour sometimes.
At 3:30 am the alarm sounds and the day begins again.

Some days Henry vomits. Some days he sleeps. Some days it looks like he might be in shock.
He is 'declining' but it's a quiet slide. Some days he's better than others. Some days his color is terrible. Some days he's right as rain. Some days he loves Mickey Mouse. Some days he sleeps through everything.

Every day we watch, take notes and try to cope.

.

Kids say the darn'dest things...

Adults say really stupid things...

Henry was sick from the very first day that he was born.

All of his doctors knew that he had a traumatic birth, but few people listened when I said, "He throws up all the time." or "He cries all the time, and I can't help him."

"Babies spit up."

"Babies cry."

We knew this. Henry wasn't our first child. I have several younger brothers and sisters. I gladly held babies, all babies, my siblings, cousins, strangers and even loud and cranky babies - until I was about 17 years old. I understand babies. They are all different, but they all speak the same language.

Henry would cry.

In the car. (An officer that pulled me over said "Uh, your baby's crying ma'am." "Yeah, just hurry up and write the ticket please!")

In the house.

At night.

In the morning.

At the supermarket. (People feel like they have to say something - "You better feed that baby!" "Shut that F*CKING baby UP! You stupid piece of white trash!" "Oh, is he hungry? Does he need a widdle foody woody?" "You listen to Grandma G! You better feed that baby or I'll shoot you!" "Have you tried burping him?" 

At Terry's Diner. "Somebody better shut that baby up! I just had surgery! I can't take it!!" (If you've just had surgery - maybe you should shut up and go home?)

At the doctors office. "Babies cry!" "Welcome to parenthood!"

At Grandma's.
At The Saturday Market.

At the park.

At the beach.

At the Aquarium. Glare - Glare - Glare - Scowl 

In his stroller.

In his swing.
At the office where I worked. "God, is something wrong with that baby!?"

In his bouncy seat.

On the dryer.

In my arms... 

It didn't stop until 15 months ago.

Three solid years of crying.
Sometimes I'm pissed off with God.
"Why did you gift us this child and not provide the tools to help him?"
And then I'm pissed off with myself.
"Why can't I be grateful for the times that were fun and happy - instead of pissed off about the time that we lost?"

He's sleeping now. Sweetly - but I know it's because of his medication, or the exhaustion from his 4 hour barf-fest yesterday. His color is better today, but nothing like last summer when we were getting a good layer of freckles built up on our noses and arms. Now he is very pale. He 'looks sick'.

When Henry was born, I had hoped that he would be playing T-ball by now.

"Winter is Coming..."

How do you respond when someone asks how your family is doing?
I don't want to lie.
I don't want to be Debby Downer either.

"Henry's in Hospice."

The statement gets all kinds of responses. One, like today - is immediate understanding of the gravity and magnitude of the statement, an understanding of all the things that go along with the word - hospice.
This is from experience. I might see a flash of emotion, but gratefully they have learned to quell the sadness, at least until it's clear that I'm ready for it.

Another response is confusion. "Why? What's wrong with him? Will he pull through?"

Ugh... Hope has been a four letter word in our house for about four and a half years.
Just when we allow ourselves to look forward to something... hope is dashed against a stone along with our hearts.

I hate being the one to say. "No. His diagnosis is terminal."

Some folks don't understand how something like 'terminal diagnosis' could apply to such a little one.

<Noah gets irritated with me sometimes, because I am a bit of an optimist. He says, "You think that just because it's not the Holocaust - it's not bad."

I know it's bad. I know we're in the grip of transition that we don't want or approve of.
But that's life... a bunch of chaotic events that add up to our experience. Sometimes they make sense, but usually it's up to us to make sense of the mess... I won't even be trying to puzzle out this shit for a while!>

And then there's "Oh, I am so sorry. What can I do?" Followed by teary eyes and a hug. This is the most dangerous response. If I cry now... I may never stop.

Winter in Westeros is not measured by months. It's unpredictable... it can last years - it can last a week.

Our winter is on it's way, I already feel the frost. A week of snow is manageable, but I suspect we will be cold for a long time.

"Who would have known how...

...bitter sweet this would taste."


Thank you Adele

Henry loves Adele. Very few things make Henry happy, as often as Adele. He loves Train, and C-Lo and other top 40 selections, but nothing consistently calms him from a crying fit quite like Adele. Twinkle Twinkle Little Star is a favorite too, just ask his teachers!
Henry also loves the laugh track on Two and a Half Men. He always laughs with it. We get to see a lot of laughing during a Two and a Half Men marathon occasionally!
He loves the applause on Wheel of Fortune and The Price Is Right. He laughs with it! And for about 3 months, Henry loved Phineas and Ferb.

Henry doesn't have many ways to communicate. Laughing, smiling, crying and grunting are about it. So anytime we discover something that makes him laugh, we are pleased and encouraged that we may have a new way to share the world with Henry.

Henry spends a lot of time locked inside of himself. We know he is in there, but have had a difficult time engaging him. There are a few activities that we know he likes, and these are what we go to. It's difficult to introduce new things. He doesn't see or have the ability to deliberately touch. He has learned how to trigger a button to make his teachers sing (recording), or to trigger another rendition of Adele's "Someone Like You"...

This thing... this hospice thing.. this thing where my son is sick... this thing where everyone is sad and sorry... I hate it. Truly and completely. I am having trouble finding the purpose. Henry has struggled for everything that he has, and he doesn't have much.

I suppose this is the part where I admit that I am angry. A deep, gripping anger. An anger that endures laughter and hugs, out lives the bag of licorice, resists the tenderness of my beloved, and anger that lies in wait for an opportunity to attack - and no one is safe.
I suppose this is the part that I admit why I'm angry. I'm angry for never seeing Henry walk. For never seeing Henry hold a spoon. For never seeing Henry proudly present a finger painting. For never seeing him crash his cars together. For never getting a hug from Henry. For never hearing Henry ask for a kiss or a story or some ice-cream. For never hearing Henry tell me about his new friend at school. For never watching him walk away, independently toward the next adventure.

I am angry that he has struggled for so long, to grip and grasp at small pleasures while enduring pain and complete dependence. I am angry that the small successes have taken so long to accomplish that we are unlikely to see many more.

I am angry that my son is sick, that he won't survive.

I'm angry that I have no control.

I'm a woman. When I am angry I respond with a sharp tongue. I respond with tears. Stinging hot tears that can't stop this constant current of helplessness that is flooding my life.

I'm angry. So, I talk about the things Henry loves. Henry loves his sister's voice. Henry loves when Lewis is scolded loudly. Henry loves when his daddy holds him and tells him stories in a deep rumbling voice. Henry loves when Zane sings to him.

Events

If you would like the pdf file please email me or leave a comment.

The ladies from our local Etsy Street team have organized a fundraiser for Henry! Please print out the flyer and bring it in when you order your pizza. 50% of the proceeds go directly to Henry's account!

We are planning a celebration of our marriage. Our wedding was scheduled for June 23rd, but due to the nature of Henry's status, we had a simple ceremony in our home with our children and friends and family. We would like to invite those of our friends and family that would like to join us, in a celebration.

June 23rd from 11am - 1pm.

Petersen Park Barn

870 Berntzen Rd Eugene Oregon 97402

We will have lunch and music.

Everyone is welcome.

Twinkle Twinkle...

...Little Star...

Jenn, Henry's teacher came over on Wednesday. She brought lots of fun things for Henry to play with, including a big red button with a recording from all of his teachers.

He must have pushed the button a hundred times on Wednesday. Laughing and kicking while the ladies sang.

On Thursday, Casey came and checked Henry's vitals after we had a pretty rough night. Henry had been in pain and sleepless. We determined that Henry's infection was causing a decline and that his end would be sooner than we originally thought. We made phone calls, gathered our family and friends and monitored Henry's vitals for more evidence of his condition.  His vitals were up and down and up and down all day. Weak heart rate, fluctuating temp, slow respirations.
His teachers came, sang Twinkle Twinkle little star and a couple of other of his classroom favorites. Heart breaking and bittersweet. My sweet boy slept while they surrounded his bed and celebrated his love of music.

Because Noah and I were uncertain of how long we would have Henry, we prepared a civil ceremony with the Hospice chaplain, Rebecca. We had set the date, rented the venue and secured the catering and flowers just the day before. Our plans always seem to be a waste of time. Luckily we had the presence of mind to waive the waiting period for the marriage licence. and were able to get married without much going wrong. It wasn't a typical wedding. Vigils and weddings don't usually coexist, but we wanted Henry to be a part of it. We shared our vows with a house full of people, some were strangers to us, but all of them loved Henry. The dog howled from the bathroom, the little kids played with pom poms and yelled out funny things while we exchanged our promises for a lasting and life long love. We laughed, cried and laughed again.
Friday we saw Henry plateau. Low respirations and weak heart rate stayed the same. He continues to decline, but at a slow rate. We are monitoring his temp and vitals on the hour.

We have so many people to thank. We are grateful for all of the support. Financial support, emotional support and the constant stream of food being delivered. We have felt like we were on an island for so long, it's strange and overwhelming to be on the receiving end of so much love and kindness.

We want to say a special thank you to Casey for sticking with us and for answering our questions. We'd also like to thank his wife and children for sharing him with us. We are grateful and understand the sacrifice.

Anastasia, Zane and Lew are a here too. Not wanting to leave. Not wanting to miss anything. It's a stressful and bitter time. They are wise little people. Cuddling up with Henry in his bed, singing songs to him and trying to soak up and give as much love as possible. They are brave and sweet. Thank you to all of the lovely people who have shown up for them too. Thanks for loving my children through this.



There are a few events planned, for fundraising and celebrations. I will post another blog with all of the info for those by days end.

Today.

Is Tuesday. Henry slept last night. We finally found the correct combo of meds that help relieve his pain. We can tell that he has some swelling in his abdomen. But we aren't certain how the infection is spreading.
Zane asks smart questions about Henry, when I pick him up from school. Anastasia is tender and wise. They are both well adjusted kids, having a terrible experience. They love their brother. They don't want to see him in pain.
"The bed is sort of scary," Anastasia said upon seeing Henry's hospital bed. "but I see how he needs it."
We set it up in the living room. Not a normal place to set up a bed, but it's the center of our house, and Henry, right now, right or wrong, is the center of our family.

We are so grateful to the folks at hospice. We have learned that many of them have never worked a peds case. That they have children of their own. They are all loving, kind, supportive and compassionate. We mentioned wanting to get married before Henry passes - so Trevecca is now our 'Hospice Wedding Planner'... Everyone at the hospice office, even people that don't have direct contact with our case - are pitching in to help get us married quickly and with some celebration. We should have more details, when where and what-not this afternoon. Our friend Liz is hoping to do the music. We're trying to secure a venue, the rings, and a dress this week. The food and cake are taken care of. We have our ceremony itinerary in rough draft, and the wedding favors are already being made. We had planned a ceremony for August - bumping it up a few months has eliminated the need for all of the extras, but has complicated a few others... It will happen though. Everyone is welcome to join us, where ever it happens.

We have been experiencing a great flood of love and support from our friends and family from all over the world! It helps us stand up straight, move through this with courage and grace and relieves our feelings of loneliness. Thanks to my mom and to my baby cousin Jess for taking care of Lewis and distracting him from all of this. 
We have folks bringing us food. You can sign up to drop off something, or have something delivered too. 
~Elizabeth has set up a sign up sheet online. Sign up HERE.
~Our friends Rose and R are organizing fundraiser at Papa's Pizza. More info will be posted as we get it.
~Our friend Christine felt moved and has made some beautiful candles and is donating the proceeds to Henry's fund. You can preorder through this LINK. <3 I think she has 2 candles left.
~Our friend Fred challenged all of his friends to buy out my shop. He's reduced my stock by about 30%. He's giving them until Friday! It's sort of fun to watch people get excited about feeling useful - until it hits me why they feel the need to be useful. If you want to help Fred sell out my shop HERE's a link! 
~And if you feel the need to donate cash, we have set up a bank account. You can reference Henry Kaplowiz, or Rebecca Fitkin or the account # 521758 Selco Credit Union members can go online. Other folks may need to go into a branch, but I think folks can call and wire a transfer from their bank accnt to Henry's accnt. 
~You can also make direct deposits to my Paypal. tritegreen @ gmail.com (remove the spaces)

We are so grateful for all the outreach. Our hearts are breaking for Henry and our family but our friends are keeping us enveloped in love and kindness. 



I asked Zane how he feels about everyone reaching out to us, "It makes me want to help them, to help other people like us." We already have a few plans for paying it forward. Thank you for inspiring generosity in our children and expanding our hearts.

"Why is everyone being so nice to us?" "Because people feel helpless to help Henry. They love us and want to make this as easy as possible. Because they see themselves and are suddenly grateful for their own health and the health of their children. Cards, emails, money and food are easy ways to show their support and love." "Makes sense."

Our friend Staci has been sharing Henry's story with her children. One of them took it to his classmates. They all painted and drew pictures for Henry. We'll be hanging them up in our little red house. 
If you want to send Henry a picture, he likes bright colors - The sun and rainbows are easy for him to appreciate! 

Much love.

More Time...

...for Henry.

We have been handling things for Henry, like he's a our patient. Every two hours Dad gives him medicine and we feed him. We sooth him when he cries, clean him, wash his face, change his diapers and attend to the infection in his gtube.

Henry's hospice team promises to give us time to spend with him that is less stressful, in the last bit of time he has. They will be helping us care for his medical needs, at home on a regular basis. We can enjoy him.

Our friends and family have reached out. Their feelings of grief and helplessness are unmistakable. We understand the need to 'do' something, when there is nothing that we can 'do' to change the situation. So, in the spirit of taking action, when you can't change the future, our family has discussed the things might make it easier for us to enjoy our Henry. We want to spend time loving him and each other while creating lasting memories.

First: The Mundane
~Food is always welcome. Meals for the freezer are great. Certificates for pizza or take out are good too.
~Coffee. We love coffee.
~We could also use some help with folding laundry and dishes.
~We also need to fix the yard. We are planning to get a couple of yards of dirt to fix the mess a 'friend' left of our front yard, but we need bodies to help move it and rake it.
~Gas for the van.
~Cash and gift certificates. (Home improvement, groceries, household supplies)

Second: Extra Ordinary
~Tickets to the Oregon Zoo or Wildlife Safari

And as always, support Mom's Etsy Shop.

Click photo for link!

The beginning...

...of the end.

Henry has always had issues with his Gtube. Before we left the hospital, he was vomiting and retching. His nissen fundiplication was failing before we got him home.
He cried for nearly 18months after the surgery, as we learned how much formula he could tolerate. He was on a pump, for 18 months, with a constant feed, 24hrs of small amounts of formula dripping into his gtube, because he could not handle more than a few oz an hour.
Eventually, we were about to get him off of the pump during the day, with small 1oz feeds every hour. When we were able to feed him 2 oz every 2 hours, we stopped using the pump all together.
We were always looking for ways to improve his nutrition, but were restricted by the available formulas. When I read about blenderized diets, I was thrilled! We had been blending food for him, before the gtube placement. He had been taking blends through his bottle.
We started small, with steamed veggies and oatmeal in a tiny food processor. I would have to push it through a sieve before pushing it through the gtube. His life changed. He started gaining weight. He stopped crying. That was last March 2012.
Last July, I got a job. It no longer took two people to care for Henry.
In Obtober 2012, he got really sick. He was diagnosed with a strep infection in his gtube. Since then, he has been plagued with multiple bacteria overgrowth. On May 17, 2013 the labs came back with the results of the latest infection. Two types of staph, and another bacteria normal to the inside of his stomach. Staph is easily treated, but our Henry, is allergic to the two most common options. That leaves us with choices that would change Henry's quality of life, and damage his dignity.
We opted for no treatment.
Last week, we met Henry's Hospice team.
Casey is Henry's nurse. He's a couple of years younger than me, a redhead, and looks like he could be my brother. He has never had a peds case before, but landed Henry's case, because he's the strongest team member. He said he read Henry's files, and was moved to tears. He has a four year old son, himself and said he couldn't help but see his face in Henry's.
We also met Trevecca the social worker for our case. She offered counseling for our family and for the kids. She has been doing this for about 12 years. When she saw that Henry had a little brother, she ordered some books, so that we will be able to help him through this process too.
And we met Suzette, when she went to the pharmacy and brought meds for Henry on a Friday night, so that we would have what we needed over the weekend. She also gave Noah some tips to help soothe his sinus infection.

We don't know how long Henry will be sick. We don't know how the staph will attack his body. Right now, he is happy. He's happier than he's been in a while. He smiles and 'dances' and responds to everyone's voice. He sleeps through the night and likes to cuddle.

Our friends and family have asked what we need. Our friends and family ask us what they can do. For now, there is nothing we want more than time.

Here is a list of how to help. 

{THE LIST}

Happy Birthday Henry! 4 Years!

Happy Birthday Henry.
You are now 4 years old.
We have spent 4 years loving and caring for you.
You have spent 4 years trying to grow and learn.
We have had some success, and we have met milestones.

You have stopped crying.
You have gained weight.
We have begun to understand your attempts at communication.
We have learned to trouble shoot with out losing our minds.

Many people follow your progress.
Many people love you.
You have been an inspiration to some.
You have been a challenge for others.

We protect you from criticism.
We shelter you from outsider's fear.
We stand up to those that think they know better than us.
We tolerate only the best care from the professionals and clinicians.

You have become the axis.
The center that we all spin around.
We can do little to cure your whoas,
but we can try to make you as comfortable as possible.

We love you Henry.
We grieve still.
But where our pain has revealed weakness,
our love helps us find strength.

We will continue to watch you grow.
We have come through so much already,
We are confident that we can see you through.
Through trials, pain, grief and success.

Henry you are loved.
Henry you are accepted.

I hope our actions always reflect these things.

"Love, like a river, will cut a new path
whenever it meets an obstacle."
- Crystal Middlemas -